Well, it’s been a memorable week! March 12/13, 2001
Of course, the big news is that Aelfwine is in the hospital, receiving chemotherapy for Leukemia. If that seems sudden, well, it was. He’d finally decided that seven weeks was too long to take to recover from the pneumonia, and got an appointment with the doctor on Friday morning on the way to work. The doctor agreed, X rayed his chest and took some blood to test. At noon Dr. Quirbach called to say that Aelfwine’s `blood showed Leukemia, and how soon could he get to Nashua to see the oncologist?’ Since his work is most of the way there, he was able to get there within about an hour, and at two, was talking to Dr. Posner the oncologist from St. Josephs.
Of course, being within fairly easy range of the Dana Farber, THE cancer hospital in the U.S. (or at least that’s what they tell us- of course, so did Lisa when she was dealing with them, which is more believable) they transferred him there “immediately”. (This gave us our first introduction to “Hospital Standard Time”: waiting for about three hours for an ambulance that a nurse reminded us every half hour was going to be there “any minute, or at least within a half hour”.) They wouldn’t let him drive himself, so Willow and I have to pick his car up from their parking garage as soon as we can get to it. Not during today’s ice storm…
Now to divert, a moment, to my usual opening of the letter with a weather report- on Tuesday we had a wonderful storm. The weathermen predicted it nicely, and everyone had a chance to get ready- most of the schools were canceled and many offices-including Aelfwine’s. We had a MARVELOUS day playing cards and board games, playing the piano and generally being lazy and familial. The accumulation was, well, more than the last storm- somewhere between two and three feet, with lots of drifting to make that measurement difficult. The geo was mostly hidden, and the van was nicely drifted in. Kat didn’t have school Wednesday either, and Jon’s bus company decided not to try it, although his school had a simple two hour delay. So we all dug like crazy,(except Aelfwine, who was winded after a couple of shovelsful) and got Star to school and Aelfwine off to work. Friday there was a second storm coming in, so when he was transferred to Boston, rather than have Aelfwine worry about me driving in it, I went home- leaving him still waiting for his ride, and didn’t follow him down and watch him get checked in.
The Friday night snow was only about a foot, so while it was no fun to drive in (even just back to Lyndeboro) it only took about an hour to dig out of the next morning. Willow had a workshop for the Renn fair. Luckily, Michelle and she were car pooling, so that wasn’t interrupted. She had a great time, she said that she hadn’t laughed so much in weeks. This weekend they were working on character development. (They STILL want her to wear a pot on her belt so that people will be able to tell she’s a cook. This argument will probably go on for weeks.)
Also on the weather, I understand that it’s the best ski season in 30 years, and I note with some irony that having decided NOT to do maple syruping this year, this is the first year I can remember when we’ve had a good long stretch of days above 40, nights below freezing and snow on the ground. I console myself that it should make the syrup more affordable when we buy it.
Back to the tale of Aelfwine. While I was digging out Saturday morning, he was getting his first run of tests. Apparently since Leukemia is a cancer of the blood, one doesn’t have to biopsy as much, since all you need is to look at blood which is fairly easy to get at, and you can see the abnormal cells. His initial “crisis” problem was that because of the Leukemia he had become anemic. His Red Blood Count, which is supposed to be around 40, was down to 15. So the first thing they did- “right away” (the wee hours of Saturday), was started giving him whole blood. After four units of blood, he’s up to an hematocrit of 26, and they started giving him platelets (the component of blood that helps with clotting). That seems to have started a hive reaction, but not so severe that they can’t control it with Benedryl. So his blood is looking better now- except for the white cells, which is the one’s the Leukemia attacks directly. Anyway, they did get around to taking a bone marrow sample over the weekend- from his hip, and yes, it hurts.
Everyone there is terribly impressed with how healthy he is- for a guy with leukemia. No smoking, no drinking, healthy eating and exercise, he’s young (the average age is 65). Not only that they checked and his particular cancer cells have a certain protein that allows them to use a special drug that targets that protein and presumably makes the chemotherapy more effective at attacking cancer cells rather than the rest of his body. I’d always wondered why people’s hair falls out when they have chemotherapy. Apparently the drugs they use target cells that reproduce a lot- like cancer cells. But certain other cells in your body do that too- like your hair follicles (also, presumably, your nail beds), and some in your digestive tract especially those in your mouth. They say he can have a wig- and guys with beards even can get false beards- they seem to understand the importance of self image. But they also say that face and body hair is more likely to thin than fall out, so he may not need it. That’s good, because while a bald head would be weird, the kids all agree that they aren’t really ready to see his chin.
Anyway, according to Aelfwine’s doctors while the bad news is that Leukemia is fast moving, but the good news is that it’s curable. They actually use the word cure. A lot. They say can completely get it, and he will be totally recovered. (Of course, they could be lying to us- they seem to have a very flexible idea of what constitutes what people should be told. As it changes so often I am really getting the impression that they are masters of telling you whatever they have learned will get the most cooperation out of patients and their families for what they think is best for them. I don’t doubt their motives at all, except that I don’t think they respect our intelligence or ability to cope much, and so are manipulative out of habit and training. This, of course, leaves the burden of research on us.
They did pass us a pile of little pamphlets- there’s something less than satisfying about What everyone should know about Leukemia written in 1980. On to the internet! (where, of course, one can believe about 10% at best and the game is figuring out what 10%). The figures I’ve seen so far say that at this point they’ve got an 80% total remission rate. Of course the same set of figures also claim a 40% five year survival rate. Now what is THAT difference all about? They eliminated the cancer but the other half of those who died died of complications from the chemo? Several people have sent us directions to web sites to check out. Maybe I’ll get to them tuesday, (today) as there’s an ice storm and I assured Aelfwine that I wouldn’t drive in it.
His diagnosis is Acute Myloblastic Leukemia- if I wrote it down correctly. (I take a lot of notes, but of course, the doctors don’t check them.) That’s not in the list of options in the pamphlets, but could be a mistranscription, or it could be a specific sub variety or an alternate name that this doctor uses for one of the usual varieties. I’ll let you know.
The drugs they’ll be using are Ara-C (Cytarabine) and Cerubidine (Daunorubicin) which they gave us fliers describing (so I’m confident on my spelling of those). Those are the basic anti leukemia drugs which they have confidence in after using them for 30 years. The fact that they have so much experience with this makes the engineer in AElfwine very comfortable. It appeals to the engineer in me too, but my engineer is warring with my alternative medicine practitioner- so I’m not quite as sanguine about it as Aelfwine is. Of course confidence is far more important in this case than mine. He’ll also be getting Cephtrasadine which is for when he gets neutropinic, (rat! I forgot to put down the definition of that! Only that it means that some reading has gone under 500. update, next week) and the new drug Myletar, (which is the one they are so excited about) which is the one that targets the specific protein CD33 which he has on the surface of his Leukemia cells.
His doctors are Dr. Daniel DeAngelo, who’s his attending physician, and Dr. John Hamarch, who’s his fellow. The attending is the experienced physician who oversees the residents who do the bulk of the work at the hospital. The fellow is the doctor who will follow his progress during his whole stay, no matter how long it is. Apparently every month the attending physicians rotate, and it just happened that Dr. DeAngelo is THE specialist in Leukemia- out of all the oncologist at the Farber. So for a month, he’s got THE specialist associated with THE cancer hospital in the world. As they told me, people are shipped here for treatment from all over the country and even the world. Arab sheiks come to this ward with their cooks and their bodyguards that stand outside their doors. Of course, I suppose that means that in other months his attending physician could be an obstetrician. But that’s weeks away. (which is pretty much how I’m dealing with everything right now- one day at a time.)
We are told that the room where he is will be his “world” for the next couple of months. Of course, when we first got there they said 2-3 weeks, and that grew to 4-6 weeks, and finally this morning, the social worker told us that we might as well apply for Social Security Disability even though it doesn’t kick in until you’ve been on disability for five months, because on average he can expect to not get back to work for eight! (Boy, is Granite going to be in trouble! Of course, the doctor said that he’d be able to telecommute for part of that time- we’ll have to see how that effects the Disability- obviously we don’t know enough about that yet.) Still, they figure he’ll be in there for a couple of months, so he can make himself “comfortable”: tape cards to the walls, stuff like that. He CAN’T have any flowers or live plants though- (I suppose he could have them if they boiled them first) any that are sent to him will simply be left in the lobby for the staff to enjoy. (I figured that at least they should send them home with me, but apparently that’s not the way they do things.) So we are telling anyone who wants to give him a gift to think about donating blood in his name. If you want to write him, his address is:
6C Room 60
Brigham and Women’s Hospital
75 Francis St.
Boston, MA 02115
and his phone # is 617-732-4169 it goes right to him. Call here if you just want a progress report- and this letter will still be written every Monday as usual. I can add people to the e-mail list for it, if you know anyone else who’ll want weekly updates. I’ll be on the road a lot, so remember, my cell phone is 603-554-6415. Try not to call him between 7 a.m. and 10 p.m. (unless he asks you to). He’s setting up e-mail now at firstname.lastname@example.org, so that should start working sometime next week. (so far he hasn’t “wined”)
Now that he’s on Chemo, he’ll be tired a lot, so if you are going to visit, even if you arrange it a week in advance, it’s probably a good idea to call just before you leave to make sure he’s going to be up for a visit. Also, no visitors who have been exposed to colds, flus or anything contagious. Wash your hands before you hug him, and that sort of thing. Remember, until he’s rebuilt his health, he’s got no immune system. Also, turn off your cell phones when you come into the hospital because it could effect some of their medical equipment.
(As a personal note, let me add that he really does have enough stuffed bunnies.)
Charlotte (Tracy and Jan’s daughter) sent him his first paper crane (it’s a japanese tradition to send a person with leukemia 1000 origami cranes) and I hope he’ll that many. I think our SCA friends are going to send him pictures of the SCA.
Kerensa has offered to help butcher the extra goats, and Ken and Minna are going to take care of the rabbits that I’d offered her for her tanning workshop, butchering them and wrapping and freezing them for us. Vicki contacted the Heifer Project to see if they can place any of our extra does. (It would really be a pity to eat a potentially good milker.) We’ve hit Tamooj up with trying to round up folks to put up our house at Pennsic this year. (Of course, there’s no guarantee we’ll be able to go, but we might as well prepare for the difficulties we’ll have if we do.) Olaf and Val and several others have volunteered to get tested for bone marrow matching if it should come up. Everyone has been very supportive.
Actually, it probably won’t come up. First, if the chemo works as well as they hope, the remaining bone marrow in Aelfwine’s bones should regenerate, with no transplant needed. If that doesn’t work, then they look to his siblings- which, since he has three, they figure should generate a match. Outside the sibling group the chances of a match are one in ten thousand, but since that’s not even going to be an issue until the first round of chemo is checked to see if it works. Of course, if you want to join the general donor pool and are willing to save the life of a stranger, not just AElfwine, please do.
He’s been really bummed to find that he will never be able to give blood again, he’s donated at least 6 gallons already, and hoped to be able to donate that much again before he died, so if anyone wants to give him a present he REALLY would like, donating blood would be good. If we could show him that the blood banks are up 6 gallons because of him, he’d feel a bit better about what he won’t be able to give personally anymore.
The chemical “cocktail” goes into his body through a Hickman Catheter- which is installed “permanently” (for the duration of the therapy) in one of his major blood vessels in his chest. Since the drugs are so corrosive, they have to put it into a big one, rather than the smaller vessels they can use for saline, glucose, etc. He started running a temperature over the weekend, so they started the first treatment through a vessel in his neck- apparently they wanted to get started, but don’t want to risk an infection in the Hickman.
Leukemia patients in this acute stage basically have NO functional immune system, so the main reason he has to be hospitalized is to run interference (through sanitation as far as possible, and antibiotics when that fails) against all the possible infectious agents to which he could be exposed. The reason he’s in Brigham and Woman’s is because they have some sort of partnership with the Dana Farber Cancer Center.
Despite having to deal with ANY hospital bringing my “control issues” into sharp focus, the Farber is really very advanced in dealing with patients supportivly. For example, they have a whole complementary therapy unit- with people who do Reiki, hypnotherapy, guided imagery, a lot of the “alternative” therapies- but practiced in conjunction with the latest standard medical procedures. The doctors are cool with his taking Essiac during the chemo to help with the side effects (I did NOT mention the possible cancer fighting properties), and they had had other patients who’d used it. I did point out that I was making it in strict compliance with sterile procedures- after all, it was developed for cancer patients- with compromised immune systems. So he’s started taking it three times a day. Until he’s done with the chemo though, he can’t take vitamin C or other anti-oxidants, they’ve learned that those interfere with the chemotherapy, although they are good for rebuilding the health afterward. (can you say “even more complicated”, boys and girls?). That’s why I’m taking notes.
I think that covers what’s happened the first three days. (It’s been a long week!) E-mail or call if you have questions and I’ll try to answer them.
Other than that, because of the snowstorms, it’s been a quiet week. As usual, Star really resents missing days of school, and grumps about it a lot. But he’s shoveled without too much complaint, and has been wonderful about helping with the chores.He hasn’t been down to see his father yet, but is looking forward to the video phones that the social worker says the Farber has to loan to patients with children while they are in the hospital. So is his father actually. Techno-junkies. He doesn’t seem too disturbed about his father’s illness, but he does tend to internalize things that bother him, so we will have to watch and be open to anything he wants to let out about it. Frankly, I wouldn’t want him to worry too much, as the prognosis is good.
Kat is more open about being upset- she went down with me Saturday and drew him some pictures on his white boards. I sent notes to school with the kids to let their teachers know what had happened and in the first class, someone mentioned what they’d done over the weekend with their father, and she dissolved into tears. At that point she just pulled out the note, and all was explained. The guidance councilor got her some origami paper, and after she folded a few cranes she went back to class, feeling a bit better. Frankly, that’s about what I’d expect- fine, most of the time, with occasional tear storms that catch you at odd moments when you least expect it.
Other than that, her dance performance was canceled due to the snow storms eliminating their rehearsals. It will be rescheduled. On the other hand, while we were shoveling she was on top of the pile by the driveway because it had gotten too high for us to throw snow past the top- so she was stationed up there pushing the top off the back. Since then, she has tunneled a cave into the side and through the top of the big berm and is working on an offshoot for Star. I remember when my brother and his friends used to make those snow caves. Mothers always worried about them collapsing. Now that I’m a mother, I worry. Part of me is like the kid, excited about the cool thing she’s making, and part of me is watching the weather and wondering how long before it melts to structural instability. So she doesn’t work on it when I’m not here, and answers IMMEDIATELY if I call. And it’s a cool project.
Dan has started working for a temp agency, and is bringing Brad up here on Saint Patricks Day to prove to him that her mother really IS crazy and DOES put green food coloring in the corned beef on Saint Patricks Day. Well, that’s the way MY mother fixed it! It’s only once a year. I think she’s visiting Aelfwine on Tuesday.
People ask me how I’m doing- and I fear my answer is much like the ones we get from the hospital- it depends on what’s going on from minute to minute. Sometimes I’m just fine- at other times I am a basket case. You should have seen me (or not!) when first got to the hospital Saturday. They give excellent directions on their voice-mail (if too rapidly). What they neglect to mention is that while there is plenty of parking in the hospital area- there are only two parking garages that will take vans of 6’6″, (none over that) and those only have about 12 spots total! After about an hour of driving around and around checking out big blue P sign after P sign with no luck, I was crying hysterically. Finally I risked one of the 6’6″ places (I thought we were 6’8″) and the nice attendant allowed me to park in one of the empty “Reserved for Van Pools, others will be towed at owners expense” spots. I felt like it was some sort of sick, twisted joke to play on people who already have enough to worry about. (And it turned out I didn’t have my Rescue Remedy in my purse either!) When I calmed down, I decided to try to rent a smaller car for the month. Willow and I gave using the T a shot, but it took an hour and a half ride and made it into a 3 hour ride. Oh, well. Still, her suggestion to take Rte. 2 is more efficient than coming down 93, as I’d been doing. At first I thought it was going to be two hours each way.
Dear Steve tried to visit Aelfwine, and even got as far as the lobby before the old memories of when Lisa was there overwhelmed him. I think that he’s going to be my biggest support during this time, as I know whatever I’m going through, he’s been through the same and worse. I really miss both Lisa and Mom right now, and of course, remembering people we’ve lost to cancer is inescapable.
Did I mention that last week I picked up a set of tuned wind chimes? As it’s still very snowy, they’ve been hanging in the kitchen, and ring every time someone brushes past them. I find it very soothing.
Intellectually, I still feel that there is something seriously wrong that no therapy is considered acceptable if it hasn’t been tested, but the organizations who test protocols won’t bother testing any therapy unless they can make back the money that the esting will cost by selling the product afterwards. Because of this, no safe, easily available therapies are being tested, at least not in America. Still, we, personally, aren’t having an intellectual exercise on the greater good, we are dealing with a serious problem that must be solved immediately. I have o admit that due to this political situation, while I would really prefer a less dangerous therapy, at this point there isn’t one available (that I know of, and they certainly aren’t suggesting any). So we use the tools we have available when the job needs doing, even if we suspect that there are better ones elsewhere. (And I’m sure there are those who’d argue with me on that, but for now, don’t bother- while I usually enjoy a debate, right now I don’t have the time, and besides, it’s not theoretical now.) I am very well pleased with the human aspect of the hospital, it appears to be much better than the (admittedly few) other hospitals I’ve seen. I am exceptionally happy that we just lucked into about the best care available in the modern world being nearby- right time, right place, even right attending. I was thrilled that they have a whole complementary medicine team available- we’ll be able to have a RN who practices Reiki come work on him. And I am SO glad the social worker is helping us with the parking situation. I’m also relieved that, so far at least, it looks like our finances will get by. And I am so touched at the outpouring of support that we’ve been getting in the last few days. But not surprised.
Other than that, I am finding solace, as I expect many other people going through this type of thing do, in doing simple household chores between trips to the hospital. I get great soothing from washing a load of dishes, sweeping or cooking. The twice daily barn chores are especially therapeutic- milking the goats, getting the rabbits ready for kindling, feeding the geese, looking at the peacocks… I leave the barn feeling renewed each time. As I’ve always maintained- people shouldn’t have this kind of life if it’s not what they want. I’m not sure I’ll get much soothing from the project of getting the place clean enough for a weakened immune system during the next month. But Willow’s friend Jenny is coming for a couple weeks to help us- which is going to be great. Really, I am more worried about Willow than about Aelfwine and myself. She’s trying to keep the house running and the kids on schedule while I’m running around doing hospital visits, calling Social Security, etc. etc. And let’s face it, besides having CFIDS, she’s doing the PCA job, the weekend workshops, and working on her art/writing career. I cannot think of a way to show her how much we appreciate her, and how much she does for us.
I realize that this has been pretty much a one topic letter, but I figure that it’s pretty much what people are wondering about, and I’ve tried to answer all the questions most people have been asking. Actually, having this letter in place makes it much more efficient for me to get the news out to everyone without having to answer each question multiple times to different friends, so if you know anyone who’s going to want weekly updates on Aelfwine, let them know and if they send me their e-mail address, I’ll add them to the list.
Honour says Alex is doing very well in school lately. Wolf had pneumonia last week. Megan finished (preparing) her book, and is now working on the printing part of it. I spent most of last week working on a new booklet for introducing new members to the SCA as the barony doesn’t have one- I was going to offer it at the Barony Meeting on Saturday, but I’ve been diverted. I guess that won’t get printed up until this current situation has passed. (I hesitate to call anything that is going to last for between 2-8 months a “crisis”.)
Please be assured that we intend to take full advantage of all the wonderful offers of help that are being tendered. And especially, keep praying. I, truthfully, have more faith in prayer than in chemicals. Thank you.
“Health nuts are going to feel stupid someday, lying in hospitals dying of nothing.” – Redd Foxx
PS When I finally got up to the Cancer floor after the misery and hysteria of trying to find parking, when I came into Ælfwine’s room he seemed to be asleep, but he opened his eyes and said “Hot Dang” when he saw me. I don’t know anyone else who’d honestly use that expression, and it meant the world to me. Also, he complained that the milk they have in the hospital tasted “cowey”, the counterpart of all the people who say our milk tastes “goaty”.